It feels so bleak

[Sad Staffs]

Now we have the Alzheimer’s diagnosis, at last, they have decided they won’t medicate because of the health issues with his kidneys and bladder. We know that his upcoming surgery next month is likely to affect his dementia. I think the assumption is that he is in the early stages of dementia, but he does so many things that make me question if he is further down the line? And, where will we be post surgery? Things won’t get better, they can only stay the same if we are lucky, but past experience tells me that he could deteriorate quite a lot.
It’s just such a frightening worry.
So many things he just can’t do, he can’t work things out, he repeats things, he obsesses over things, his poor balance and mobility, his aggression when he looks like a different person, and quite honestly he scares me.
I spend my whole day, 7am to 10 pm looking after him, nights I’m on edge as he is urine incontinent and I never know what the morning brings.
I love him but I feel selfish. I worry who will care for me when anything happens to him, and more importantly who will look after him if I’m not here? I can’t leave him for more than 2 hours, 3 maximum. And then I worry if he is ok.
What sort of life do either of us have?
There is no foreseeable future.... it all feels so bleak.

 

[Rosebush]

Hi sadstaffs, sounds just like my OH, although he can still walk ok and he is not incontinent(yet) he also scares me when he is aggressive, we have had 4 horrible days this week and I dread tomorrow, I can't leave him at all and he can no longer drive oh and the icing on the cake he refused to go to day care. My OH is nearly 71 how old is yours? Lx

 

[Starbright]

Hi sadstaffs, sounds just like my OH, although he can still walk ok and he is not incontinent(yet) he also scares me when he is aggressive, we have had 4 horrible days this week and I dread tomorrow, I can't leave him at all and he can no longer drive oh and the icing on the cake he refused to go to day care. My OH is nearly 71 how old is yours? Lx

@Rosebush ...your post is my story apart from he’s 80 he will not do anything he doesn’t want to ... wake up every morning thinking what kind of day is it gonna be ? Hugs thinking of you.A x

@Sad Staffs ...Hugs.. stay strong stay strong Ax

 

[Sad Staffs]

Hello @Rosebush
My husband has just turned 73. I was 73 last week.
We were going out for lunch on his birthday, but he said I had ruined his birthday, so I did what I shouldn’t and lost my temper. He hurts my feelings all the time. It’s like he just doesn’t see me anymore, and doesn’t have any thought or consideration.
He was very aggressive last night because I took longer than he wanted me to when I brushed my teeth! He was so nasty and aggressive, screaming at me. If I’m not doing what he wants at the exact moment he wants me to, then he just loses it.
My husband had his licence revoked a couple of weeks ago.
All that I’ve said here and yet I feel desperately sad for him, and my guilt goes off the scale.

 

[AliceA]

Now we have the Alzheimer’s diagnosis, at last, they have decided they won’t medicate because of the health issues with his kidneys and bladder. We know that his upcoming surgery next month is likely to affect his dementia. I think the assumption is that he is in the early stages of dementia, but he does so many things that make me question if he is further down the line? And, where will we be post surgery? Things won’t get better, they can only stay the same if we are lucky, but past experience tells me that he could deteriorate quite a lot.
It’s just such a frightening worry.
So many things he just can’t do, he can’t work things out, he repeats things, he obsesses over things, his poor balance and mobility, his aggression when he looks like a different person, and quite honestly he scares me.
I spend my whole day, 7am to 10 pm looking after him, nights I’m on edge as he is urine incontinent and I never know what the morning brings.
I love him but I feel selfish. I worry who will care for me when anything happens to him, and more importantly who will look after him if I’m not here? I can’t leave him for more than 2 hours, 3 maximum. And then I worry if he is ok.
What sort of life do either of us have?
There is no foreseeable future.... it all feels so bleak.

I really am sorry for the turmoil you are going through. I know it sounds trite but try not to look too far ahead. A bit of planning yes, I find it helps me to get a few things in order. A false sense of sercurity perhaps. Just makes me feel I am doing something positive. I must admit I do not go out as my husband has a swallow problem, it is overwhelming but try to looked after yourself. A big hug xxx

 

[karaokePete]

I agree that it can be bleak because we all know things aren't going to get better. At least I just get huffs and tantrums rather than actual aggression.

The stress of it all was 'brought home to me' when I read a copy of my wife's latest consultant's report yesterday and the last line read "Significant carer stress was observed today." It's the first time anything was said about me and no comment/help was offered at the time,

At least we have TP.

When it comes to aggression do have an escape plan and seek help if required, even TP can help. If possible, carry a phone and have a secure room with an escape route(like ground floor window). Summon help like the police if required. At the very least back out of the room where your OH is at the time. When it comes to contacting the police that can be useful as they can be good in such circumstances and they will keep a record that may be handy in the future when care needs are being assessed. There is an AS Factsheet about the issue and you can find it with this link https://www.alzheimers.org.uk/sites...ctsheet_dementia_and_aggressive_behaviour.pdf

I wish you all strength.

 

[Manc70]

Now we have the Alzheimer’s diagnosis, at last, they have decided they won’t medicate because of the health issues with his kidneys and bladder. We know that his upcoming surgery next month is likely to affect his dementia. I think the assumption is that he is in the early stages of dementia, but he does so many things that make me question if he is further down the line? And, where will we be post surgery? Things won’t get better, they can only stay the same if we are lucky, but past experience tells me that he could deteriorate quite a lot.
It’s just such a frightening worry.
So many things he just can’t do, he can’t work things out, he repeats things, he obsesses over things, his poor balance and mobility, his aggression when he looks like a different person, and quite honestly he scares me.
I spend my whole day, 7am to 10 pm looking after him, nights I’m on edge as he is urine incontinent and I never know what the morning brings.
I love him but I feel selfish. I worry who will care for me when anything happens to him, and more importantly who will look after him if I’m not here? I can’t leave him for more than 2 hours, 3 maximum. And then I worry if he is ok.
What sort of life do either of us have?
There is no foreseeable future.... it all feels so bleak.

Hi Sad Staffs, I am so so sorry for the position you find yourself in, I am so sad for you. Apart from the additional worry you have regarding medical issues I can totally understand what you are going through. I am lucky that I don’t have the incontinence issues (yet - that awful frightening word keeps cropping up!). I’ve had a fairly good run (after a bad one) with my OH but I’m thoroughly fed up that all his memories and stories never include me and family or our 47 years together - just so many stories about what he and his mates did in the army and his career after the army. He finds photos and I have to listen to - this is what he did when he was here, there and everywhere but he has no memories of any of our holidays, family and friends get togethers etc, in fact it feels like anything we ever did together has gone from his mind. He knows we’ve been together all this time and treats me like his wife, it’s so so strange - I know it’s the dementia but it doesn’t stop me feeling so hurt and angry, and I don’t know what at exactly.
I wish I could find the words to make it easier for you but please take care and know that you are not alone xx

 

[Sad Staffs]

Thank you for your comments... I always find it supportive knowing that there are people who really understand.
I just find it confusing. The symptoms he has seem to straddle early onset but mostly I feel he has some symptoms described as later stages. With others, family, friends and professionals, he holds it together and he seems more or less ok. Sometimes, in front of others, I look at him and question myself.
But they don’t see what I do. No one has seen him lose it and his aggression. Yes, they can see his poor balance and mobility, but they don’t see his obsession, that he can’t write hardly at all, that he can’t put his own Incontinence pads on, that I have to tell him every time what he has to do, on things he does numerous times every day.
I used to think he was being lazy mentally, he blamed everything on his being dyslexic. This was a few years ago. Now I wonder whether his Alzheimer’s had already started.
I just want him back, I know that will never happen, and I know I have to stop thinking about myself... and take each day as it comes, and be thankful that I still have him.
Again, thank you for being there x

 

[Sad Staffs]

Hi Sad Staffs, I am so so sorry for the position you find yourself in, I am so sad for you. Apart from the additional worry you have regarding medical issues I can totally understand what you are going through. I am lucky that I don’t have the incontinence issues (yet - that awful frightening word keeps cropping up!). I’ve had a fairly good run (after a bad one) with my OH but I’m thoroughly fed up that all his memories and stories never include me and family or our 47 years together - just so many stories about what he and his mates did in the army and his career after the army. He finds photos and I have to listen to - this is what he did when he was here, there and everywhere but he has no memories of any of our holidays, family and friends get togethers etc, in fact it feels like anything we ever did together has gone from his mind. He knows we’ve been together all this time and treats me like his wife, it’s so so strange - I know it’s the dementia but it doesn’t stop me feeling so hurt and angry, and I don’t know what at exactly.
I wish I could find the words to make it easier for you but please take care and know that you are not alone xx

@Manc70 ... I read your post that really touched me.
We have been together 44 years, had a lovely life together, had wonderful holidays, and I know that until recently I was the only person who really mattered to him. As my son said, he idolised me. I just can’t come to terms with where this person has gone, and I’ve been left with a different person that I don’t recognise.
My husband does still have quite recent memories, but instant things are not there. Like I have to tell him to do the same thing repeatedly. He just can’t retain things.
I do feel for you, you must feel shut out of his life.
Thank you again for your welcome kind words. xx

 

[canary]

I just find it confusing. The symptoms he has seem to straddle early onset but mostly I feel he has some symptoms described as later stages.

It sounds to me like classic frontal lobe symptoms. When you are talking about some symptoms being described as later stages, which type of dementia are you talking about? If you are looking at Alzheimers then yes, symptoms that are later stage symptoms (mostly behavioural ones) are typical early symptoms when you are looking at frontal lobes dementias.

My OH has some from of frontal lobe dementia, but at the moment we dont yet have a diagnosis, but we have been told he has documented frontal lobe dysfunction and documented decline. He too gets obsessions, is losing the ability to perform tasks (he now does practically nothing but sit with his tablet all day), has been sexually inappropriate, gets verbally aggressive (fortunately not physically aggressive), he too has poor balance and tremor and is just beginning to get occasional incontinence. Yes he is considered to be in early stages.

 

[AliceA]

I agree that it can be bleak because we all know things aren't going to get better. At least I just get huffs and tantrums rather than actual aggression.

The stress of it all was 'brought home to me' when I read a copy of my wife's latest consultant's report yesterday and the last line read "Significant carer stress was observed today." It's the first time anything was said about me and no comment/help was offered at the time,

At least we have TP.

When it comes to aggression do have an escape plan and seek help if required, even TP can help. If possible, carry a phone and have a secure room with an escape route(like ground floor window). Summon help like the police if required. At the very least back out of the room where your OH is at the time. When it comes to contacting the police that can be useful as they can be good in such circumstances and they will keep a record that may be handy in the future when care needs are being assessed. There is an AS Factsheet about the issue and you can find it with this link https://www.alzheimers.org.uk/sites...ctsheet_dementia_and_aggressive_behaviour.pdf

I wish you all strength.

Such good advice thank you for being there and all on TP. I was feeling lost in a maze before I was told about this site.
I know enough to recognise how stress builds up in myself, it is subtler than we think. As you said even when seen by others there is no real help. Someone suggested I did too much and should get out more. I just said How?

 

[Sad Staffs]

For someone to tell you @AliceA to get out more means they have no understanding of your situation. Yes, I know people can mean well, but it doesn’t help does it? I just try to let platitudes wash over my head... I shut off, and know I’m becoming more introverted.
I’m never happy, never laugh, cry myself to sleep almost every night. Even I know that I’m pathetic.
I feel I don’t really exist anymore. I’m just the person that must care for my husband... without me he has nothing.
Take care @AliceA, and all you lovely caring people on TP. You are the ones I can turn to when I feel it is so bleak xx

 

[Rosebush]

Hi again sad staffs, my husband takes donepezil 10mg and also citilapram20 mg, I have read donepezil causes aggression I don't know whether to stop giving him them, maybe I should ask the doctor first but I'm worried they won't agree and I'll be back to square1 Lx

 

[maryjoan]

Hello @Rosebush
My husband has just turned 73. I was 73 last week.
We were going out for lunch on his birthday, but he said I had ruined his birthday, so I did what I shouldn’t and lost my temper. He hurts my feelings all the time. It’s like he just doesn’t see me anymore, and doesn’t have any thought or consideration.
He was very aggressive last night because I took longer than he wanted me to when I brushed my teeth! He was so nasty and aggressive, screaming at me. If I’m not doing what he wants at the exact moment he wants me to, then he just loses it.
My husband had his licence revoked a couple of weeks ago.
All that I’ve said here and yet I feel desperately sad for him, and my guilt goes off the scale.

This seems to be par for the course with this terrible disease, and all of us on TP only have each other to lean on....... because this disease makes everything ONLY ABOUT THE PWD we become invisible, everything is for them, about them and the sadness is they cannot help it, and they do not know the problems they cause.... My OH lost his license last year, I no longer drive because of sight problems - he sold the car, and we live in a remote village with little by the way of buses - we are almost housebound. I cannot remember the last time I went into a shop....

Good Luck to us all, each and every one!

 

[AliceA]

For someone to tell you @AliceA to get out more means they have no understanding of your situation. Yes, I know people can mean well, but it doesn’t help does it? I just try to let platitudes wash over my head... I shut off, and know I’m becoming more introverted.
I’m never happy, never laugh, cry myself to sleep almost every night. Even I know that I’m pathetic.
I feel I don’t really exist anymore. I’m just the person that must care for my husband... without me he has nothing.
Take care @AliceA, and all you lovely caring people on TP. You are the ones I can turn to when I feel it is so bleak xx

All blessings, Staffs. xxx

 

[PalSal]

I agree that it can be bleak because we all know things aren't going to get better. At least I just get huffs and tantrums rather than actual aggression.

The stress of it all was 'brought home to me' when I read a copy of my wife's latest consultant's report yesterday and the last line read "Significant carer stress was observed today." It's the first time anything was said about me and no comment/help was offered at the time,

At least we have TP.

When it comes to aggression do have an escape plan and seek help if required, even TP can help. If possible, carry a phone and have a secure room with an escape route(like ground floor window). Summon help like the police if required. At the very least back out of the room where your OH is at the time. When it comes to contacting the police that can be useful as they can be good in such circumstances and they will keep a record that may be handy in the future when care needs are being assessed. There is an AS Factsheet about the issue and you can find it with this link https://www.alzheimers.org.uk/sites...ctsheet_dementia_and_aggressive_behaviour.pdf

I wish you all strength.

@Hi Pete,
Hope you are finding ways to ease the "carers stress"
I agree with you completely and we must have a plan in case of violence from our partners. In 16 years I have only had two maybe three violent episodes with my husband, who is the gentlest of men. Truly he is an English gentleman. I am more the problem when I get over tired and over worried about the future...carers stress.And I shared about my incident of shame a few months ago. I am so grateful that violence is not the path his disease has gone, and not something I really worry about on a daily basis.
I rather feel if violence becomes part of the ones life it is time to consider a big change in the living arrangement. Isolated incidents are learning experiences for carers. For me, I learned after our first physical altercation, that I cannot insist, if he has taken a stand very strong on an issue...I must let go. My learning experience was probably 5 years ago when he insisted that the trash needed to be placed atop the post box. OK....every week I let it go. Then one day, we had had a guests and there was salmon skins and dripping juices from the trash bag running into the post box and running all down it. I took it off and placed it on the street. He put it back. These went on about 5 or 6 times with a great deal of arguing on the street. Finally he punched me to the ground. It was very scary. Never happened again. I can clean and wash the post box.
Not a problem today, he can no longer understand to carry the trash out.
Now the trash is another of my chores......the list gets longer.
But for us , the only violence I have experienced is when I insisted on having things my way. When I can let go of that then there is harmony.
It is gets easier as I no longer have children to get to school, a job to go to, and a seemingly endless list of things to do. Now I am the carer only, those things have pasted.
Sorry this ended up being a long road to no where share.

 

[Sad Staffs]

@PalSal
I think your post put me to shame. Yes, my husband gets very aggressive. But it’s mostly verbal unkind swearing abuse. The only physical abuse has been when he pushed me over, went to use his elbow, always physical threatening mostly, but he has never punched me. It’s almost always at night when I’m putting his Incontinence pants on, and I know that inside he despises what is happening. He has always been such a strong proud man. My heart is breaking writing this.
It’s such a lonely existence being a carer, but I love him and I know that there are people who are having a tougher time than I am.
Take care and thank you, because I know if I gave in all the time, then there would be more harmony xx

 

[Grahamstown]

I am also guilty of being the more angry partner because I get so frustrated by the problems of dementia. He is a kind gentle man who can be so irritating with his obsessions, mainly ‘going to the pub’ and alcohol issues starting around 4.-5 pm every day, but there are others. I have managed to wean him off most of the time but at the cost of constant pleading and I do think it is worth it. This morning however, he brought me a cup of tea in bed, the first time for a very long time because he has been sleeping in late recently and been quite confused, and only yesterday I had trouble getting him to get dressed. I have discouraged it due to spilling it on the carpet going upstairs. I told him I appreciated it but preferred to have it downstairs as I have said so many times. He also stews the tea because he can’t remember how long to leave it. So I feel really bad because I am sure he was trying to do something nice for me, and I got rattled because I have told him these things over and over again. He may be emerging into a better phase, making tea and coffee at all is getting beyond him when he is bad. So I am taking him out for coffee and a walk on this lovely morning.

 

[Starbright]

@Hi Pete,
Hope you are finding ways to ease the "carers stress"
I agree with you completely and we must have a plan in case of violence from our partners. In 16 years I have only had two maybe three violent episodes with my husband, who is the gentlest of men. Truly he is an English gentleman. I am more the problem when I get over tired and over worried about the future...carers stress.And I shared about my incident of shame a few months ago. I am so grateful that violence is not the path his disease has gone, and not something I really worry about on a daily basis.
I rather feel if violence becomes part of the ones life it is time to consider a big change in the living arrangement. Isolated incidents are learning experiences for carers. For me, I learned after our first physical altercation, that I cannot insist, if he has taken a stand very strong on an issue...I must let go. My learning experience was probably 5 years ago when he insisted that the trash needed to be placed atop the post box. OK....every week I let it go. Then one day, we had had a guests and there was salmon skins and dripping juices from the trash bag running into the post box and running all down it. I took it off and placed it on the street. He put it back. These went on about 5 or 6 times with a great deal of arguing on the street. Finally he punched me to the ground. It was very scary. Never happened again. I can clean and wash the post box.
Not a problem today, he can no longer understand to carry the trash out.
Now the trash is another of my chores......the list gets longer.
But for us , the only violence I have experienced is when I insisted on having things my way. When I can let go of that then there is harmony.
It is gets easier as I no longer have children to get to school, a job to go to, and a seemingly endless list of things to do. Now I am the carer only, those things have pasted.
Sorry this ended up being a long road to no where share.

Hi @PalSal ...I have been pushed several times but never punched it’s mostly verbal. It’s the same for us if I insist on having things my way (( and really only if he’s a danger to himself or won’t take his meds)) then there is no harmony and we end up having fierce arguments ..I must try harder to let things just go and wash over me.
The sun is shining it’s a beautiful morning so hope everyone has a better day today

 

[carolynp]

I am also guilty of being the more angry partner because I get so frustrated by the problems of dementia. He is a kind gentle man who can be so irritating with his obsessions, mainly ‘going to the pub’ and alcohol issues starting around 4.-5 pm every day, but there are others. I have managed to wean him off most of the time but at the cost of constant pleading and I do think it is worth it. This morning however, he brought me a cup of tea in bed, the first time for a very long time because he has been sleeping in late recently and been quite confused, and only yesterday I had trouble getting him to get dressed. I have discouraged it due to spilling it on the carpet going upstairs. I told him I appreciated it but preferred to have it downstairs as I have said so many times. He also stews the tea because he can’t remember how long to leave it. So I feel really bad because I am sure he was trying to do something nice for me, and I got rattled because I have told him these things over and over again. He may be emerging into a better phase, making tea and coffee at all is getting beyond him when he is bad. So I am taking him out for coffee and a walk on this lovely morning.

I am so sorry. It is so hard. My OH is making my early morning tea with half milk and half hot water now. And today he couldn’t put the bin liner in the kitchen tidy. Such little things but so upsetting! Like you I feel so guilty when I get exasperated, because I sense his distress at not pulling his weight.

Today I’ve felt physically exhausted all day. I couldn’t do more than half of my gym class. Yet I have no reason to be physically tired. I am sure it must be the weight of psychological distress. Anyway, I know it’s pointless for me to go on about all this! I just wanted to say I’m listening and I know what you’re talking about. Love C.